The One Thing You Should Know About Celiac Disease - friends having a picnic

During Celiac Disease Awareness Month the internet is awash in great celiac disease facts. But building awareness is more than just sharing facts, it’s sharing stories of real humans living with celiac disease. So we asked our community members to share their stories by answering 3 simple questions.

The Community

First, here’s a quick breakdown of the folks who answered our poll and how they identify.

The One Thing You Should Know About Celiac Disease - diagnosis demographic pie chart

Average age of people who specified the age they were diagnosed: 26.4 years

We received an overwhelming amount of responses and are not able to include every single one here. We are grateful to all the community members who were willing to share their stories.

Tell us a little about your journey with celiac disease

Early diagnosis

“My 2 year old was very sick and wasn’t growing had brittle hair and weight 12 pounds. She was still breastfeeding at the time, I was advised to stop in order to start journaling her foods intakes. Countless test and biopsy she was diagnosed with Celiac. Short after I was also diagnosed with Celiac.”

• • •

“I was diagnosed with celiac at age 7, when there was little information or guidance available to help cope with the disorder. My parents and I were given a large binder that weighed 5 pounds filled with laminated pages of what I could and couldn’t eat. As I’ve grown up, restaurants have begun to cater more towards celiacs and more options are readily available in grocery stores. I still get very sick sometimes from accidental ingestion if gluten at restaurants or what not, but the Nima Sensor has made it so much easier for me to feel confident and safe about eating out, without feeling like an outcast because I’m to hesitant to try certain foods because of my condition!”

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“My son was diagnosed with Celiac 8 years ago when he was just barely 2 years old. I cried when I found out, but it was more out of relief at finally knowing what was wrong with him. I loved watching his recovery. He would eat 8 bowls of cereal, our entire fruit share of peaches from our local CSA. He gained one pound per week for four weeks straight. I truly believe I saved his life and loved watching him come back to life. His diagnosis has also turned me into a baker and I’m launching my own custom gf baking company this summer.”

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“I was diagnosed 13 years ago when I was nine years old. Back then, no one knew what gluten was which made shopping for food very difficult. Now that gluten-free eating is a diet trend, there are so much options for food. While this is great, eating out in restaurants is more difficult in ways because people eating gluten-free as a choice do not have to worry about cross contamination which carries on to restaurants. I have to be extra careful dining now because Celiac is not a lifestyle choice.”

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“I was diagnosed with celiac when I was going into 6th grade. After years of being sick it was a relief to finally have an explanation. My mom says that after I was diagnosed and started following a gluten-free diet it was like I transformed from being tired and cranky all the time to the kid that she knew I really was. It was really hard at first, especially because gluten-free wasn’t exactly mainstream. Now I’m in college and I am so thankful for my Nima to help restore my confidence and peace of mind as I learn to navigate the food world independently.”

Late diagnosis

“I was sick for multiple months. I did not know what was going on. I was a college athlete and I was loosing weight and my hair was falling out. I got really scared. After a few months I finally went to the doctor and they ran tons of tests. They finally figured out it was Celiac Disease. I had severe anemia for almost a year. I was getting iron infusions and taking supplements.”

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“I have had Celiac disease my entire life, but it wasn’t discovered until I was 23. The damage to my body has been incredible, but I am slowly healing and becoming my true self. Having undiagnosed celiac puts you at risk for a wide spectrum of health problems and I am lucky to have finally reached a point in my life where I can be healthy, run marathons, and really be my true self. I honestly feel like my brain was put into another persons body and I couldn’t be more grateful.”

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“I’m pretty sure I’ve had CD my entire life but didn’t get diagnosed until I was 45. I’ve been so sick most of my life and struggle with several autoimmune diseases. I was a symptomatic and did not shows signs of classic celiac. Biopsy was the determining factor in my DX.”

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“I was not diagnosed with celiac disease until I was around 50 years old. I did not have the typical issues that some people do, but I was experiencing a lot of back pain and was having to take Advil everyday. After my daughter was diagnosed as having celiac disease (after a horrible pregnancy), I decided to see what it was like for her and decided to go gluten free. Within a few weeks I realized that I no longer had any back pain and there was no need for pain killers. I had more energy and felt overall much better. I have remained gluten free since that time and I am thankful to have found out what caused my back pain (inflamation related). Now the only time I really have that same pain is when I get gluten thru cross-contamination.”

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“I could eat whatever I wanted until I was in my late 50’s. Then, digestive and stomach issues started. I’m pretty sure that a very stressful period ‘kicked off’ Celiac disease in me. Now, I’m a pretty sensitive Celiac, but I am monitored by my GI, and my latest blood tests showed no sign of gluten. Finally! It’s a struggle, especially going out to dinner, which my husband and I have always loved to do, but we are making it work.”

What’s one thing you feel everyone should know about having celiac disease?

Eating gluten-free is not a choice.

“I think my biggest thing is that I don’t choose to be gluten-free, I have to be. I wish people were a little more sensitive to that. And the fact that celiac is not any allergy which is a huge deal!”

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“That being celiac is not a trend, choice, or allergy, that it is a biological malfunction within the immune system!”

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“I think it’s important to make people aware that we aren’t necessarily picky eaters by choice but because we have a serious illness that needs to be constantly monitored.”

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“It is NOT a choice to eat gluten free; the only “medicine” for celiac disease is to completely remove all sources of gluten from food, which is very difficult since it is added to SO many foods, and being glutened is a poisoning and causes damage to the person’s body.”

Gluten-free needs to be completely gluten-free.

“I’m not trying to be selfish by going first and getting seconds before you get your first, but once there’s a single crumb on even a carrot it’s no longer safe. I’m not trying to be paranoid but Sometimes it’s not worth taking any chances Because it’s not just a tummy ache, it affects my whole body for weeks!!!!”

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“Celiac is very serious. It’s not an allergy and if I continue to eat gluten I will most likely die from the damage my body goes through. It only takes 1/64th of a tsp of gluten to cause damage to a celiacs upper intestine. Cross contamination is a huge deal!”

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“We need actual gluten-free food. NOT ‘gluten friendly’, whatever that means. Not ‘gluten free but made-on-the-same-equipment/cooked-in-the-same-pot’ food. If it isn’t 100% gluten free, it isn’t gluten free. Period.”

Gluten-free means gluten-free everything.

“It’s so much more than not eating flour, bead and pasta. It’s scrutinizing ingredients lists for absolutely everything you buy – food, shampoo, toothpaste, and in my case makeup and lotions.”

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“Being gluten free isn’t truly enough. You have to be diligent. You have to research every single thing that comes into your kitchen. You have to eliminate so many foods while also balancing your nutritional needs. Its a difficult balance to achieve and you can’t do it alone. Bottom line, if a food makes you feel bad trust your gut!! Do your research and make sure you are eating what you think you are. And also: GLUTEN HIDES IN TOOTHPASTE.”

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“That it’s not as easy as avoiding bread and pasta. That gluten is everywhere, and you can never be *truly* sure that you’re not poisoning yourself — which makes for quite a mess of day-to-day emotions. It’s easy to feel like an outcast with celiac disease. (I guess that was several things.)”

There are psychological effects.

“That the psychological aspects of it are as bad, if not worse, than the physical aspects. It isn’t any fun at all. The gluten free and self-diagnosing with gluten sensitivity fads make it seem like a healthy, active, fun, hip thing, but is is not at all. It’s the exact opposite. Also, don’t take being able to eat for granted. Being able to eat whatever you want, wherever you want to, is an incredible blessing.”

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“It’s real and it does affect sufferers’ self-esteem.”

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“Celiac disease makes eating out like walking through a mine field. If someone says they have Celiac, always respect their decision not eat any food not prepared themselves. Inadvertent cross contamination in a home or restaurant can make seemingly gluten free foods (like a steak or salad) contain enough gluten to be harmful to many Celiacs. Never judge them for trying to protect their health and well being.”

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“It’s harder than “just being gluten-free.” The amount of time it takes to do research on every restaurant you or your friends want to go to can be exhausting. And even after all that, restaurants screw up. A LOT…Another thing, when folks make a big deal about it (“Can you eat this?” “Is this gluten-free” “Why can’t you have that”), it makes me feel awful. I want people to be considerate of it, but not make it a thing.”

It’s not a full-stop diagnosis.

“It doesn’t have to slow you down. Meals/travel take a little more planning, but that planning quickly becomes second-nature. And, you can go anywhere GF. We’ve been to Italy (amazing!), Japan, & Thailand. We’re headed to Sweden & Denmark later this year.”

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“Your life doesn’t have end. It may take some adjustments but you’ll figure out what works for you. There will be highs and lows but it’s manageable.”

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“With your Nima, you can take control of your health and live a full life!! I always bring food when I travel just in case, but I have found that my Nima allows me to enjoy everything from business dinners with my husband to meals at friends homes without compromising my health. My Nima empowers me to make the best choices for me.”

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“Don’t panic, this is not the end of the world. But it is mostly up to the individual to be in charge of their own healthy approach. Study, read, get to know others who have been through it. There is life beyond wheat.”

Any tips for other folks who are diagnosed with celiac disease? 

Be patient with yourself and others.

“No one truly understands the journey. Be patient with ignorance.”

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“Try to be patient with yourself, and with others as they offer their support.”

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“Allow yourself time to grieve the loss of gluten and possibly your favorite foods. Those around you may not get it at first, but it can be a big change and we need to be patient.”

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“In my first year, I never thought it would get easier. However, it does. You learn to manage what you can eat and what you can’t. You learn to deal with people who don’t understand that you do not have a choice. You learn to brush off being called ‘high maintenance’. Other people are sometimes more of the problem than Celiac is! Keep a sense of humor, and take it one day at a time. You’ll find new recipes and new places to go. You can do it!”

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“If you are newly diagnosed, the first several months to a year are very, very difficult. Give yourself time to adjust physically and psychologically. Don’t get too discouraged. And don’t ever, ever, ever, ever cheat on your GF diet!”

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“Be patient, you will adjust and it’s going to be great to see how good you feel!”

Do lots of research.

“Read as much info as you can and talk to others for ideas and tips. Over time you learn what tastes good, cheaper, etc. Join Facebook groups and the Nima newsletter for local ideas.”

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“You will heal over time. Choose progress over perfection. Apps like NIMA and the Gluten Free Scanner make it easier to find safe food. Many restaurants cater to gluten free but do not have Celiac safe preparing stations. It’s also important to check your OTC drugs and prescriptions and cosmetics.”

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“Find a support group on Facebook! Educate yourself like crazy! Most doctors just say don’t eat gluten. There’s much more to it than that. Gluten has different names and is in so many things you would not expect, like soy sauce and lip stick. Also, don’t make the mistake of trying to replace lost foods with gluten-free foods. Most of the gf foods are high sugar content and you end up gaining lots of weight. Cook from scratch as much as you can!”

Be bold, don’t be afraid to be your own advocate.

“Do not hesitate to educate people about celiac and do not feel bad if you can’t accept food or drink they are offering you or have to say no to certain restaurants. When I was first diagnosed I felt pressured to accept items from people who had “made the effort” to offer me something I could eat or go to restaurants where I wasn’t sure I could eat that food to not be awkward. Your health is much more important than people’s feelings. Explain and they will understand.”

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“Do not be afraid to advocate for your needs and educate others! That is something I struggled a lot with and continue to struggle with but since joining the food committee at my college I have learned a lot about the importance of explaining your needs to others and advocating for your well-being.”

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NEVER expect others to be prepared for your needs or feel entitled to be accommodated. It doesn’t happen often, so it is best to just make your own preparations without imposing on others and look at it as taking charge of your own health. Even when others try, it just isn’t always safe…only others with Celiac or living with those with celiac truly understand. And, every once in a while, you will be surprised with some wonderful treat or understanding and it will make your day.”

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“Get bold. Don’t accept glib statements from servers. Ask to talk to the manager or better the chef. Don’t worry about insisting to see the kitchen. And if you aren’t totally happy feel free to leave. The only person invested in your health is you.”

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“Research, read, refuse! You are your own best protector! When in doubt, live without!”

Connect with your community.

“Take a deep breath, the first few days and weeks are the hardest but there is a vast community standing behind you ready to help you navigate this new challenge.”

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“The online celiac community is amazing! Everyone is so supportive of one another, as we are all going through similar daily struggles and hoops that we have to jump through. If you have social media, follow celiac or gluten free accounts! They usually post tips and recipes that can really help for individuals who are newly diagnosed. Most importantly, remain positive! It is really hard at first because you may feel like the special one of your friend group, and you technically are, but thats an upside to the disorder in a way. I think about it like I am one in 133 people who has the condition, and that’s pretty cool to me. You’re actually just the cool one of the friend group at that point :)”

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“Invest in a Nima and use it! Also take advantage of the information available not only through Nima, but also on numerous GF websites and apps. The GF community is very supportive and helpful.”

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“Find someone who knows what you’re dealing with and who knows how you deal with it. Share research with each other and let each other know if you find hidden gluten in a product or if you have a bad experience. Find someone you can complain about food companies with and who you can scream with when you’ve done all the research and taken all the measures and you still get glutened. Find someone who you can’t wait to share your latest gluten free discovery with. Life with Celiac is isolating and the easiest way to get through it is to find some one who is driven to live the same life you are.”

Stay positive.

“Focus on what you CAN eat not what you can’t.”

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“Keep positive Life is good ! Keep your trust in yourself. Everyone can live happily with the GI tract they have. Once you learn basic facts about your own situation, find out what to eat and mostly to must be aware if what to NOT to eat. That is where NIMA device comes in as your essential tool, a partner in assuring that you keep problem ingredients out of your body. The effort you put in is highly rewarded; you’ll feel better and know that sticking an altered diet is easier than you first thought and you’ll be delighted with your better health.”

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“Don’t despair. And I promise that as you feel better you really will get over the cravings for things you used to eat that hurt you.”

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A special thank you to our Nima community for sharing their stories and advice with us! You can check out more community stories here.

  *Responses have been edited for length and clarity.